Specifically, do you regret trying all of the meds (particularly biologics) before surgery or having gone through it does it give you peace of mind that you'd done all you could to save your colon? I know hind sight is 20/20 but we're facing Remi vs surgery now for a 6 year old and are flipflopping.
Thanks
Sherry

My only regret, and it is a deep regret, is not having surgery sooner. But I was a young adult and not a kid when I had the surgery (29 years old).

When I had surgery my colon had low grade dysplasia (LGD) and my GI doctor, who was as conservative as they come, told me that after 20 years of UC the cancer risk was going way up and to have it done. He actually advocated it which surprised me and told me all I needed to know about his evaluation of where my colon was at, at that time.

When it was removed in April 1992 my surgeon said it was close to perforating and it could not have waited any longer. He said it was dissolving in his hands. His words.

Before surgery I was on high dosage of prednisone. They also attempted immunosuppressants, specifically Imuran, and it sent my liver function haywire so they had to stop it. I am not sure if Remicade was around back then.

This message has been edited. Last edited by: DJBHusky,

I really can't say I regret trying all the meds before having surgery. Remicade was my last resort. This way I know I did all I could but my colon couldn't be saved. But now afterwards, knowing how wonderful it is to be UC and drug free, I wish I had the surgery a lot sooner. It would have saved myself and my family a lot of grief, misery and aggravation. Here's the thing with Remicade: Not a lot is known about it since it's only been in use since 1998. It seems to work better on Crohn's patients than UC patients. And it usuallly loses it's effectiveness over the course of time. So in a lot of cases...not all of course...you are just buying time. Which may not be a bad thing since you are dealing with a very young child. I am so sorry you have to deal with this for your child. I can't imagine having to think about this for my kids. Having said that, my J pouch has given me my life back and I couldn't be happier with the results. All the best to you.

I kept my hands over my ears as my GI doc tried to convince me (for three years) to have the j-pouch surgery. Finally, I begged him to let me try 6-MP as a final resort to get into remission. Not only didn't it do what I had hoped it would, taking it gave me pancreatitis. Enough! That was over ten years ago. I had a two step procedure and chose to keep my temporary ileostomy for a full year because having it gave me the opportunity to eat and drink anything, finally! I have been very lucky. My j-pouch is a very successfully functioning part of my body and I continue to enjoy all foods and drinks. It rarely needs any special care. In many ways it is far better than the original issue when that organ was working normally! Best wishes to your family. What seems overwhelming now will become less so over time. You are doing very well, as is your daughter. Keep asking questions. There are alot of us out there!

I wish I would have known about all the good bacteria in yogurt and more about lots of water and fiber and tried it all. I was one of us that didn't have pain just flares of mucus and blood. All the doctor would do was feed me more pills that just wasn't working and making me feel awfull.All my life I was always constipated and while I smoked I was ok as it activated my digest track, but I had quit so became more on the constipated side.I had read about the yogurt and UC but didn't belive it at that time now I do but it is to late.

I do wish I had thrown in the towel sooner and not held out hope trying everything in the world when nothing worked. Remicade was not even invented yet when I had colitis, but we did EVERYTHING, including in-hospital, intravenous anti-rejection drugs and nothing worked for more than a few days. I got osteopenia from being on prednisone for 5 years, and lost 5 years of being able to travel or go canoeing or to little dive restaurants with no bathrooms because I was so sick. I did everything. Alternative medicines, chinese herbal meds, macrobiotic diet, hypnosis, acupressure and biofeedback, therapy, and all the meds that were available and many that were still in drug trials and nothing worked.

That being said, I too was a a young adult and it must be incredibly hard trying to make a decision like this for a young child. But I would say if it seems like a lost hope and that really nothing is working or that the only way things work is "sort of" and only when on a ton of body-damaging and expensive meds, that is not good quality of life and surgery is the better option.

Best of luck to you with your decision.

I tried everything available in 2000. Treatment ended with 6mp.. I'm grateful remicade was not around then as I would have tried it. I feel I made the right decision by having surgery.

Sue

I am glad I tried all the medications, because I know I did everything in my power to save my colon. Having said that, I am extremely happy with my j-pouch, and wouldn't trade it for my diseased colon any day!

Kill Colitis,

I don't think there is anything wrong with trying to pull out all the stops and try all meds before surgery, especially with a 6 year old child involved, but one thing I noticed is that a lot of people have the mindset that the colitis will either go away or go into remission, somehow, some way. Usually ulcerative colitis progresses and gets worse, and fatal cancer could be the ultimate result, as in the case of Tony Snow, who had UC for 25 years.

I have a very close 54 year old friend who has had UC for over 30 years. Currently, his treatment is 6MP, and he seems to be doing well with it. None of his scopes have shown dysplasia and he told me that there is no way he will even consider surgery until dysplasia shows up. I am just hoping that cancer does not show up before the dysplasia does.

In your case, I assume the child has not had the UC very long, so these issues may not be issues until he/she gets older. From age 9 to my mid 20s, I slowly deteriorated, and then I rapidly deteriorated in my late 20s. My scopes showed progressive inflammation over a greater area of the colon. In those days there was no remicade and my treatment was prednisone and azulifidine and cortisone enemas, almost exclusively, until the end when they unsuccessfully tried imuran. Your child probably has more treatment options available than I did as a youth. So there is hope on that front. But if low grade dysplasia shows up, that may be the sign that maybe there is a bigger risk in keeping the colon than there is in its surgical removal.

This message has been edited. Last edited by: DJBHusky,

I am kind of backward because I was put on remicade after my surgery when it was later found out I had crohn's.

But I don't regret a thing. This is a good question. I was so sick and my colon had to come out asap. My first year with my j-pouch and ileostomy were a nightmare but that's the past and here I am today. I love my j-pouch even with having crohn's and still being hospitalized often or having flare-ups. There was nothing that could have saved my colon.

Only thing I regret is not going to the ER when I had strep throat while I had UC. I was so sick for 3 days - my body was at war with itself.

As far as treatments, I don't regret trying everything - 6MP, Remicade, Humaria. I wanted to be sure I tried it all before going under.

CeeeeCeeee, I did not know I was in such good company. 6-mp gave me pancreatitis too!

Twelve years ago, Remicade was still quite new, and our ped GI, Dr. Heyman at UCSF thought the risks outweighed the potential benefits for a young child with UC. I don't know what his opinion about it is now, but I know for several years afterward he used it only for his patients with Crohn's. I think it is like many other drugs: works for some (for awhile), not for others. I would ask your most trusted pediatric GI and follow his recommendation.

In retrospect, my biggest regret is allowing our ped. surgeon to attempt a "one-step" laparoscopic procedure, when things might have gone much better with an open, two-step. But hindsight is always 20:20.

Well, I wish we would have tried just removing the last 10 inches of colon, instead of complete colon. After the surgery, the doc said that this was the only bad part of the colon. (I know, they don't like to only remove part of the colon) But the major thing is I wish i would have just stuck with an ileostomy. I felt the best I ever had with my ileostomy. Never have felt even close to that good ever, with a j pouch.

I know, for me, my parents were initially against surgery even after all medical options had been exhausted. They were even prepared to take me to the US and UK (we're Aussies) to see if any new treatments were available there (there weren't and I never did get to go on that trip - but did later on in life with a much more pleasant agenda). "But what if a cure is found, what if she hates it and blames us for having to wear a bag for the rest of her life?" Eventually, they made the hard decision to let me have surgery (I was 10 years old) and I'm so greatful they did. I LOVE my life now They don't regret it either

Personally, I wish I'd had surgery sooner. Living on 20+ pills a day, not being able to go anywhere for fear of needing a loo urgently, endless doctor and hospital visits, etc is no life for a kid. I know, I accepted surgery a lot easier than my parents did. My only question when told about surgery was "will I still be able to go swimming?" When told I could, I said "go for it!" and have never regretted it.